TABLE I.
Baseline Demographics, Chelation Adherence, and Problems with Chelationa for the Thalassemia Clinical Research Network (TCRN) Thalassemia Longitudinal Cohort (TLC)
| Chelation with deferoxamine N =79 | Chelation with deferasirox N =186 | |
|---|---|---|
| Age (years) | 22.7 (12.0), 5.6–51.8 | 22.4 (12.4), 5.0–58.3 |
| Gender | ||
| Male | 29 (36.7%) | 96 (51.6%) |
| Female | 50 (63.3%) | 90 (48.4%) |
| Thalassemia diagnosis | ||
| B-thal transfused 8+ | 65 (82.3%) | 152 (81.7%) |
| B-thal transfused <8 | 7 (8.9%) | 7 (3.8%) |
| E-B-thal transfused 8+ | 4 (5.1%) | 20 (10.8%) |
| E-B-thal transfused <8 | 0 (0.0%) | 3 (1.6%) |
| alpha-thal | 3 (3.8%) | 1 (0.5%) |
| Other | 0 (0.0%) | 3 (1.6%) |
| Race | ||
| White | 43 (55.1%) | 89 (48.4%) |
| Asian | 33 (42.3%) | 84 (45.7%) |
| Other | 2 (2.6%) | 11 (6.0%) |
| Country | ||
| US | 49 (62.0%) | 140 (75.3%) |
| Canada | 26 (32.9%) | 33 (17.7%) |
| UK | 4 (5.1%) | 13 (7.0%) |
| Age at first chelation | ||
| 0–4 | 43 (54.4%) | 108 (58.1%) |
| 5–10 | 24 (30.4%) | 54 (29.0%) |
| 11–17 | 4 (5.1%) | 16 (8.6%) |
| 18+ | 8 (10.1%) | 8 (4.3%) |
| Educationb | ||
| < high school | 0 (0.0%) | 2 (4.4%) |
| High school degree | 11 (44.0%) | 16 (35.6%) |
| College degree | 14 (56.0%) | 27 (60.0%) |
| Marital statusb | ||
| Married/committed | 11 (44.0%) | 15 (33.3%) |
| Single/divorced/widowed | 14 (56.0%) | 30 (66.7%) |
| Smoking in the past year | ||
| Yes | 9 (16.1%) | 19 (14.8%) |
| No | 47 (83.9%) | 109 (85.2%) |
| Binge drinking in the past yearc | ||
| Yes | 10 (16.7%) | 23 (16.9%) |
| No | 50 (83.3%) | 113 (83.1%) |
| Days per week on deferoxamine | 5.7 (1.2), 1–7 | |
| Chelation adherenced | 91.9% (15.8), 14.3–100% | 96.8% (8.7), 35.7–100% |
| Chelation adherence ≥ 90% | 59 (74.7%) | 167 (89.8%) |
| Chelation ≥ 5 nights/weeke | 63 (79.7%) | |
| Problems remembering | ||
| Never | 49 (62.0%) | 109 (58.6%) |
| Rarely | 19 (24.1%) | 48 (25.8%) |
| Sometimes | 9 (11.4%) | 27 (14.5%) |
| Often | 1 (1.3%) | 1 (0.5%) |
| A lot | 1 (1.3%) | 1 (0.5%) |
| Problems preparing/takingf | ||
| Never | 64 (81.0%) | 131 (71.2%) |
| Rarely | 4 (5.1%) | 36 (19.6%) |
| Sometimes | 8 (10.1%) | 15 (8.2%) |
| Often | 2 (2.5%) | 1 (0.5%) |
| A lot | 1 (1.3%) | 1 (0.5%) |
| Problems sticking yourself | ||
| Never | 28 (34.4%) | |
| Rarely | 15 (19.0%) | |
| Sometimes | 22 (27.9%) | |
| Often | 9 (11.4%) | |
| A lot | 5 (6.3%) | |
| Problems wearing pump | ||
| Never | 32 (40.5%) | |
| Rarely | 15 (19.0%) | |
| Sometimes | 25 (31.7%) | |
| Often | 6 (7.6%) | |
| A lot | 1 (1.3%) | |
| Side effects | ||
| Never | 25 (32.1%) | 100 (54.3%) |
| Rarely | 23 (29.5%) | 45 (24.5%) |
| Sometimes | 17 (21.8%) | 28 (15.2%) |
| Often | 8 (10.3%) | 6 (3.3%) |
| A lot | 5 (6.4%) | 5 (2.7%) |
| Feel successfulg | ||
| Never | 3 (4.0%) | 19 (10.4%) |
| Rarely | 6 (8.0%) | 5 (2.7%) |
| Sometimes | 13 (17.3%) | 15 (8.2%) |
| Often | 22 (29.3%) | 47 (25.8%) |
| A lot | 31 (41.3%) | 96 (52.7%) |
a
Mean (SD), range for continuous variables; N (%) for categorical variables. Sample sizes vary due to missing data.
b
For adults > 18 years only.
c
At least 5 drinks in a single day.
d
Percent of prescribed doses taken in the last 4 weeks.
e
Relevant for deferoxamine only; also include those prescribed < 5 nights/weeks with 100% adherence.
f
Questions asked about preparing deferoxamine and taking deferasirox.
g
In the past month, have you felt successful in taking your chelator?